Lupus: life delayed, if only temporarily

I recently started wearing bracelets again, and I'm thrilled to have my wrist bling back! When the girls were really little, fun, chunky bangles just didn't work for me. Their little bodies were unforgiving when it came to my arm wear...and when I went to pick them up, I couldn't ever remember to move my bracelets from one arm to the other fast enough to avoid the pain of metal grinding against flesh and bone. What's more, when my bracelets did make an appearance, the girls were so enamoured with my jewelry, they would plead with me to let them try the bracelets on, and very rarely were they returned to me in one piece, if at all. So I just put that part of my accessorizing life on hold (along with dangling earrings), until the girls and I were ready.

And now we are. So let the bangles and dangles emerge!

I knew the day would come. I just had to be patient. Just like I had to learn to be patient with many aspects of my life with lupus. Since being diagnosed, I've had to put a lot of things on hold - my career, having kids, traveling the world, driving a convertible - and I reluctantly learned the art of waiting along the way. Waiting until a flare was gone, waiting until I was stable and strong, waiting until the medication kicked in. Today, I'm happy to say that many areas of my life that were once delayed have come full circle, and many aspects of the disease that I never expected to change have done just that.

My disease is different than it was 10 years ago, or even 5 years ago. And I've tried to chart the slow, yet positive progress every step of the way. Just when I thought my sun sensitivity, my lack of energy, or my level of fatigue would never improve - they did. Just when I figured I'd never be able to survive on less than 10 mg of daily prednisone or go more than 8 weeks between doctor's appointments, I did it.

Today, I feel there are very few things that I'm still "waiting" on. I'm certainly still waiting on a cure, just like you - but so many things have changed over the years, I'm hopeful that the time will come for that to. Stay tuned for an upcoming post on what an actual cure would look like to me. (And thanks to Jess for posing the question!)

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Sara Gorman was diagnosed with systemic lupus at the age of 26. Determined not to let lupus rewrite her plans for the future, she fought to maintain her demanding work schedule, busy social life, and invincible attitude. But after four years of running her body into the ground, she realized she was fighting life, not living it. Committed to working with the disease rather than against it, she made it her top priority to start living well, despite lupus.
Her book, "Despite Lupus: How to Live Well with a Chronic Illness", details the steps it took to reach that goal.
In 2012, Sara also launched Sara Gorman’s Pillbags – a line of fun, fashionable pill organizers. The stylish, fabric pillbags can be found at retail stores across the country, on Amazon.com, and on her website at www.pillfold.com.
A native of Indiana and graduate of the University of Notre Dame, Sara resides in Northern Virginia with her husband and two young daughters.